Challenges faced by dementia carers
Inside our report you’ll discover Lisa’s story. When no one else was available to care for her husband, who has mixed dementia, she had to cancel surgery.
Read Lisa’s storyWhat if…I’m not there to care?
Our 2024 survey revealed that over three quarters of dementia carers, who are looking after a spouse, partner or parent, have no alternative care plan in place for when they can’t care.
Due to strain on my own health, I worry I will have a heart attack before my husband passes. Then he will have no one to care for him. Anonymous dementia carer, 2024 Dementia Carers Count Survey
3 in 4
dementia carers have no arrangements in place for when they aren’t there to care
Source: Dementia Carers Count 2024 Survey
1 in 2
dementia carers say there is no-one else available to care
Source: Dementia Carers Count 2024 Survey
1 in 3
dementia carers can see a time ahead when they won’t be able to keep caring
Source: Dementia Carers Count 2024 Survey
2024 Dementia Carers Count survey results
We all know someone who is caring for someone else. Our survey revealed that most family carers have no alternative care plans in place.
Many carers worry about what will happen if they aren’t there to care. Some have already experienced challenges accessing healthcare for themselves due to their caring responsibilities.
Our survey report put alternative care plans in the spotlight
Over 1,200 dementia carers shared their insights with us in our 2024 survey and we are extremely grateful to everyone who participated.
Our findings reveal how unexpected events put a huge strain on carers, which can result in negative consequences for their health and well-being. In our report we shared some of the personal testimonies we received and recommend what support dementia carers should get.
Read our report, ‘What if… I’m not there to care?’
Often carers worry about what will happen if they can’t care, but they don’t know who to talk to and what alternative arrangements might be possible. Steve Dubbins, Director of Services, Dementia Carers Count
Supporting dementia carers to develop a contingency care plan
Contingency care arrangements are plans for when unpaid carers are unable to provide care. For example, this could be in the short term due to a hospital stay or in the long term because they become too frail to cope with the physical demands of caring.
Not having alternative arrangements in place for a loved one with dementia creates huge anxiety, worry and stress for individual carers.
Dementia carers must be supported to discuss and outline what they would like to happen should they be unable to care. They should also have confidence that their wishes will be acted on. Any contingency or alternative care arrangements which are agreed must be flexible and reviewed regularly to ensure they continue to meet carers’ changing situations and needs. Helen Pyper, Head of Policy and Campaigns
Three key recommendations to support dementia carers with alternative care planning
National governments must implement carers’ strategies, which outline carers’ rights and what support they should receive.
National carers’ strategies should include provision for regular, proactively offered and frequently reviewed, assessments of carers’ needs and plans for contingency or alternative care.
At Dementia Carers Count we campaign for change
We will share our 2024 survey findings with local and national decision-makers across the UK. By acting on our recommendations, governments and local authorities, as well as health and care commissioners and health and social care professionals, can better support dementia carers. This will help more carers cope today and also plan for tomorrow.
We invited carers to share their stories
We collected dementia carers’ experiences to highlight the importance of alternative care arrangements. Carers told us about their struggle to continue caring when an unexpected event happened such as needing emergency health care.
During Dementia Action Week, we will share our collection of stories with those with responsibility for supporting dementia carers in England, Scotland and Wales.
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Dementia Action Week 2025
This Dementia Action Week, we’re speaking out and we’re speaking up for dementia carers who don’t have any alternative care arrangements in place. This is the case for over three quarters of dementia carers.
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